I have too much to write that requires a lot of thought, and not enough time to write it all out. I’m rounding up guest bloggers to help me out, but while that solidifies, here’s a new series called Short Stories.

Short Stories will be quick anecdotes from my life in a given moment. No greater purpose, just random moments that may [or may not] be of interest.


If you make a mistake, press star

As I managed to break online prescription refills from Shoppers Drug Mart, I use the automated phone service instead.

(Yes, don’t ask me how I managed to break the online service. And the app. Or why I can get Concerta cheaper at Target.)

I have three medications on my counter needing to be refilled relatively soon: Qvar, Atrovent and Concerta, all neatly labeled with their respective “7 digit Rx number located in the left hand corner of your prescription label”.

I also have a pack of hormone pills with 3 active pills remaining [because I back-to-back those F’ers—since I don’t want to be on them but am for medical reasons, obviously I will use this to my advantage], but no respective label. I “press 1” as I walk to the kitchen to find a receipt with my history to grab the number. Punch it in.

“To request another refill, press 1. To hear when your refill will be ready and confirm your order, press 2.”

Press 1.

“Please enter the 7 digit Rx number located in the left [I DID NOT NEED TO PRESS 1!!!]. If you make a mistake, press star.”

I am pretty sure pressing star will not help me.

Glance down, next on the list– “Zenhale 200/5 – Ref: 1”: Input number.

Press 2.

 

I don’t need the Zenhale for 27 days. But hey, at least when they tell me it’ll take a week to get in despite promising they’d stock it, I won’t have to revert back to my backup stash of Symbicort I have now for this purpose.

It makes sense if you have chronic disease!

start over again.

kerri —  January 8, 2014 — 6 Comments

move from the past to the present tense: you can start over again.

start over again, addison road

2014.

I am usually not big into anything attached to a new year—it’s another overhyped occasion that literally means nothing—in the words of Bryce Avary, “Who says it has to be a new year to start a new year?” I try to start again every single day—because each time I do, I hopefully find myself farther away from where I was and closer to where I’m going. Unlike most years, I didn’t do a recap post on December 31st—I know I still will in my head, but I refuse to re-live last year again in writing.

I’m starting over. Again.

I’m alive.

2013 soundtrack: part three.

kerri —  December 30, 2013 — 1 Comment

The original post in this series can be found here—the recap of that discussion can be found here. The second set of tracks can be found here.

Previous tracks: The Resolution – Jack’s Mannequin, Even if it Kills Me – Motion City Soundtrack, Feeling Good – Muse (cover), Typical – MUTEMATH, Workin’ it Out – Hilary Duff, The Year of Discovery – Tess Dunn, Caves – Jack’s Mannequin, Twenty Two – Millencolin, Diane the Skyscraper – Jack’s Mannequin, Weightless – All Time Low, Watch the Sky – Something Corporate, I Swear This Place is Haunted – A Skylit Drive.

I cut the last post off in July—from the point of August on, even though the battle had yet to begin again in September and was nowhere near over, the vibe of the tracks shift to recovery. 


Rise – A Skylit Drive

I wrote in mid-July about feeling like a grenade. Rise was a response to that–

some days i feel like a loaded gun / i paint a target on everyone […]

some days i feel like i’m fucking done / i’m waging war against everyone / it’s killing me, like it’s killing you / what’s done is done, what will you do?

–but also to freedom from that feeling, even if briefly. From February through September, August was the only good month—the only month that I felt healthy, like I could do what I wanted. Like things were falling into place. I went through August with no ER visits, no blood transfusions, and only scheduled doctors’ visits. I started Concerta for ADHD, and I could feel my world changing for the better as a result.  I went to Vancouver—I left my surroundings, I felt more free than I had in months.

run / you think you’re running away: i think you’re running in place / i’ve never seen you this way.

do not pray for an easy life / search for the strength to walk the line / i see a hope that’s hard to find / so don’t run away.

this is the end.

Things were better, it could have been the end, things could have gone back to a better semblance of normalcy—I re-ignited the hope just to go into another battle.


Cars and the Pixies – The Rocket Summer

can i be honest? / i’m ready for this year to die. / can’t help but notice / every corner where something ain’t right / i’ll be honest, i’ve got the kind of mind right now / to not be modest / i’m sick of walking on eggshells / and i believe that life should be epic.

the cars and the pixies / and the cure ain’t gonna fix me.

September was when I finally realized that I needed the chaos that had been 2013 to this point to end—“ready for this year to die”. I knew that, slowly this time, I was on another decline health-wise and there was nothing I could do except wait—the hormone meds weren’t working and I was being told surgery to remove the fibroid was 2-3 months out—at the rate I was going, there was little to say I’d still be alive in 2-3 months. It was like being in a medical-system crapshoot.

the coin you call it / if heads we’re going back to the heartland / if tails it’s falling, you know, i think i could care less where it lands / i’m exhausted, and overwrought / i’m a message in a bottle, tossing, turning here out in the sea / i’ve been swimming so long, come on / i’m ready for you now to read me.

After nearly dying in September, after surgery… this was what became true:

this is the year we start living (the cure ain’t gonna fix me…) / who says it has to be a new year to start a new year?


Word Forward – Foo Fighters

goodbye, jimmy / farewell youth / i must be on my way, i’ve had enough of you […]

years that i’ve wasted, these i-owe-yous.

they’re just fucking words. / this is life or death. / it’s time to clear the air / you’d better save your breath. / say have you heard, the poison in my heart / the voices in my head? / years that i’ve wasted, these i-owe-yous.

i meant every word, for word, for word, for word.

but it’s only words. / i meant every word / they’re just fucking words.

This is life or death” is among the only way I can represent what September was. There really is no single song that can do that moment justice, because that same moment where I was lifted off of the ER bathroom floor and wheeled into resuscitation was the same moment that the good started happening—and with the recovery, the return to life, came the real battle. (There were many times where David Grey’s A Moment Changes Everything felt appropriate, but really, it was the collection of moments that lead to the resolution, not a single one).

The ridiculous thing about medicine is a lot of it happens based on words—it’s based on your ability to articulate a situation, and usually it’s based on the fact that they care only about your symptoms, not your feelings. I left an appointment where I dropped an f-bomb in my primary doctor’s office vowing never to return (which I did, three months later after a terrible experience with a potential new doctor), because it didn’t seem to matter that I’d almost fucking died that I wanted a new gynaecologist—or that I needed a new one. It didn’t matter how I felt–I’d wasted nearly a year of my life, I’d almost fucking died and I wasn’t into the excuses. A week later I did a less-fabulous job reaming out my now-former gynaecologist, because he was so sincerely apologetic. I gave him a bit of a diatribe, I meant every word, and I left. Which is huge when the past five months of my life had basically revolved around this man especially.  The thing is, I’ll never know if my story will change any of his patients’ outcomes—because they’re just fucking words, on my end and his.

 

New Skin – Incubus

Recovery, the healing process, is largely metaphorical based on a physical concept. It’s not physical, it’s all in the perception of the physical aspects. There’s little I can really articulate about the process, other than finding myself again—which is where this song comes in.

at first i see an open wound / infected and disastrous / it breathes chaotic catastrophe / it cries to be renewed: please renew me! / its tears are the colour of anger / they try to form a scab / to the touch, it’s stiff and resilient: underneath a new skin breathes.

it’s all been seen / with the exception for the right parts / but when will we be new skin?

as outwardly cliche as it may seem / yes, something under the surface says “c’est la vie” / it is a circle, there is a plan / dead skin will atrophy itself to start again / look closely at the open wound / see past what covers the surface / underneath chaotic catastrophe / creation takes the stage

dead skin will atrophy itself to start again

it’s all been seen / with the exception for what could be / when will we be new skin?

[…] fallacious cognitions / spewed from televisions / do mould our decisions / so stop and take a look / and you’ll see what i see now.

 

Not Right – The Rocket Summer

In more than one situation, but the medical situation that was 2013 being the prime example, it has occurred to me that the true impact of something doesn’t hit me for two months. That was early December (or, the very end of November if we want to be technical). It’s the point where I can’t distract myself any longer from what happened and I have to figure out a way to deal with it that works. I’m still figuring it out. I’m “blistered but I’m better”, I don’t know what it is, but off and on? I’m just not right

But I’ll get there.

I found this song literally last week on iTunes and those moments where oh my God, this is my life? I had one.

sundown’s coming / don’t let it stop you from nothing / cause ahead i see that there’s a light on, a right on / break down in pieces / tell me all your secrets / you won’t get lost, i promise / there’s a light on, right on / there’s a light on, right on.

lately, been meaning / to let you in on some feelings / here i am, do you see them? / shine that light on, right on / there’s a light on, right on / a safe place to admit . . .

that i am not right / i don’t know what it is, i’m just not right / i need someone to untangle a couple wires inside / if we’re honest, i am not quite right

shine your light onto my weaknesses.

something cut me / there’s bitterness in my bloodstream / been holding on to dead things / shine that light on, right on […]

so heaven help me / meet me as fast as you can / of the corner / of the state and the maze in my head.


Avalanche – Sons of the Sea

There are many things that bring experiences full circle—the fact that in writing an e-mail to Jay, who encouraged me to engage in the soundtrack project, I was shaken by Avalanche (oh, literality…), was that full circle experience. This happened a couple months ago, however, it never really left my head. In a way that needs little explanation, I’m closing off December of this hell of a year with Avalanche.

I saw none of it coming—most of it is just debris that I want to leave behind, but memories that will never leave. An “avalanche in the blink of a year”.

avalanche / in the blink of a year / tidal wave of debris / unrelenting and free / on my heels and i fear / time, like an arrow in my chest / sent across salty air / as a child i didn’t care / now i bleed like the rest.

but there’s art / in that wave of debris / most eyes will see a mess / but good things coalesce / when yeasayers can see

so i’ll stand / face that liquefied hill / what i fear now the most / is the spectre, the ghost / of my past it hurts still

avalanche / an emergency /  hence the chance to emerge / i’m a seed on the verge / of becoming a tree

 

And that . . . was 2013.

From the resolution to the avalanche . . .

It’s good to be alive.

2013 soundtrack: part two.

kerri —  December 30, 2013 — Leave a comment

The original post in this series can be found here—the recap of that discussion can be found herePrevious tracks: The Resolution – Jack’s Mannequin, Even if it Kills Me – Motion City Soundtrack, Feeling Good – Muse (cover), Typical – MUTEMATH, Workin’ it Out – Hilary Duff, The Year of Discovery – Tess Dunn, Caves – Jack’s Mannequin

To recap: I published the first (and most recent) post in this series the day before I turned twenty two. Naively, of course, I thought the chaos was over: by 4.5 months into 2013, I’d been assessed for ADHD and a learning disability and given some non-specific diagnoses, and had been digging through medical chaos with an unisolated cause, which resulted in a blood transfusion culminating two weeks to the day i turned twenty two. I had to drop my Spring course, but otherwise bounced back quickly—this is where we continue.

 

Twenty Two – Millencolin

Given the circumstances surrounding my twenty-second birthday, uncovering the Millencolin song Twenty Two was a bit unnerving—but chillingly fitting:

i’m one year older now since the last time i saw you / in case you want to know, i’m about to say what i’m up to / first of all, i’m a sluggard, moving slow in a clumsy way / some peace of mind is what i want, but that will be the day. / i’ve been going without fault for so long, and this must end / running around in circles, i’ve been so far from myself / searching for the energy and the time to make a change / to make a change in my life instead of watching it pass by: do something now while i’m alive.

If we take a step backwards to January, the theme was Make Yourself, based on the Incubus lyric from the song of the same title. Twenty Two became a huge response to attempting to get back to that, helping me identify where I was really at: “i’m a sluggard, moving slow in a clumsy way” grabbed me as a response to the last week in April/early May, when I could barely get out of bed, where simply moving made my head pound and I could hear my heart beating in my ears. “I’ve been going without fault for so long, and this must end”, was not necessarily about blaming myself for what was going on, but admitting something was definitely wrong with my body—and had been for months. “Searching for the energy” is of course self evident, and the rest about returning to life—but having the desire to actually process what had just happened. Since then, a lot of my twenty-second year has been very much about being “so far from myself” because of, for months at a time, being literally unable to change my own circumstances—which is exemplified here:

twenty two, don’t know what i’m supposed to do / or how to be to get some more out of me—i’m twenty two, so far away from all my dreams / i’m twenty two, feeling blue. // i try to activate myself the best i can […]

afraid that i will be weak forever, i can’t stay in this shape any longer, my life’s just another cliche.

 

Diane, The Skyscraper – Jack’s Mannequin

can you tell me how this story ends? […] but i don’t have the energy, so she plugs my machines back in. / and the late night tv talks to me about God, but God why can’t i sleep? as she plugs my machines back in–

i’d be lying if i said this was my plan […] see i’m trying, but i just don’t understand why i can’t predict the weather past the storm

On the same day as I was supposed to have been on a plane to San Francisco to spend a week with my aunt and cousin exploring the city and hanging out with one of my favourite people ever, I was in the emergency room with a heart rate of 165. How I was feeling is pretty indescribable: the day before I was supposed to fly out, I briefly spoke to a WestJet representative allowing my mom to cancel my flights—i was feeling okay but I knew I was bleeding way too damn much. The icing on the cake was that despite the fact that I had 8+ vials of blood drawn on Thursday with a great hemoglobin, by Saturday prior to receiving a few bags of IV fluids, my levels were down to the high 70s—the week I was supposed to be in sunny California, I was instead in the ER on four occasions (visit 1: fluids, visit 2: monitoring and scheduling a transfusion for the next day, visit 3: transfusion, visit 4: night of the transfusion when I had another bad bleed but left the ER without treatment) and then enduring a D&C in my gynaecologist’s office and being forced to start hormone pills because I had no other option despite having a potential contraindication.

Of all the shit that has happened this year, the crushing feeling of having a trip I’d looked forward to for years ripped out of my hands is the piece I haven’t gotten over—and there was no way I could have predicted the intensification of the storm to come.

Weightless – All Time Low

In June, I dug Weightless from the depths of the iPod shortly after not going to California; instead of in the sun, I’d spent the same weekend in and out of gurneys in the ER and the week recovering from minor surgery and having significant doses of hormone medications dumped into my blood. The optimism of the song was catching–buying in to the and somehow I made myself believe things were better—for good. There are few things better than having two additional units of someone else’s blood put into your body to make you thankful, regardless of circumstance, regardless of everything.

manage me, i’m a mess / turn a page, i’m a book, half unread. […] i wanna feel weightless, and that should be enough. but i’m stuck in this fucking rut, waiting on a second hand pick-me-up, and i’m over getting older. […]

maybe it’s not my weekend, but it’s gonna be my year / and i’m so sick of watching while the minutes pass as i go nowhere / and this is my reaction to everything i fear / cause i’ve been going crazy, i don’t wanna waste another minute here

[…] i wanna feel reckless, wanna live it up just because. / i wanna feel weightless, ‘cause that would be enough.

and i’ve been going crazy, i’m stuck in here…

I was still emotionally a mess: I was upset and angry (and, I still am). All of the words above could not have been truer: I wasn’t feeling free, I was going crazy, I wasn’t getting anywhere, I was sick of standing still, and just being able to be healthy? That would have been the weightlessness: enough. And of course, if I weren’t growing I wouldn’t be alive, but I certainly was “over getting older” considering that the fibroids discovered to be causing the problems are typically attributed to age—hormone mediated, but in my case, very genetically influenced in their onset.

The most interesting, of course, is “i’m stuck in this fucking rut, waiting on a second hand pick-me-up”. The weird thing is that I always would say after transfusions “yeah, I’ve got [x] units of new blood”—it’s only new to me: in reality, it is the greatest “second hand pick-me-up” ever. The recovery comes with a lot of mental battles—especially in the limbo of not knowing when [or if] a more permanent-state of better is going to happen.  Regardless, i left June with optimism, but even now: weightlessness, yeah, that would be enough.

 

Watch the Sky – Something Corporate

Depending on what circle you’re in, it’s either a little-known or well-known fact that guilt can be a big theme in living with chronic disease. In July, I started having problems again and while I was attempting to deal with it on my own by seeing my doctor, my parents came in from the cabin after just starting their holidays—two days later, I was in the ER again with a heart rate of 155 and needing another blood transfusion after a 20 point drop in hemoglobin in two days. Though, the next song actually interjects into the actual hospital portion of the story, two days out of the ER, I had this massive emotional breakdown (finally?), and this song basically just made all the shit feel not normal but at least okay to be dealing with—and that there is good ahead.

i’m lost at sea / the radio is jamming, but they won’t find me / i swear it’s for the best, and then your frequency / is pulling me in closer until i’m home. / and i’ve been up for days, i finally lost my mind and then i lost my way / i’m blistered but i’m better, and i’m home.

i will crawl / there’s things that aren’t worth giving up, i know / but i won’t let this get me: i will fight. / you live the life you’re given with the storms outside / some days all i do is watch the sky.

[…] this guilt feels so familiar, and i’m home.

i think i could use a little break—but today was a good day. / its a deep sea in which i’m floating / still i seem to think that i must crawl.

There is just so much in this song that nails it, however, the fact that unknowing of what would come next I wrote the words I will fight on my arm the night before I ended up in the ER—those words were with me through my sixth and seventh units of blood, and the days following: so was the guilt. Fortunately, the desire to keep fighting lasted longer.

 

I Swear This Place is Haunted – A Skylit Drive

is there something beyond science going on here? / in the dead of fear, fear / rise up willingly and confront us / this is the last winter: part of a change for better.

i’m moving forward now, the thought of a ghost brought me to life / i’m moving forward now / turn all of this white, the creature at night / you said it would never find out where i rest my head at night.

let us be the ones who block out the sunlight / light projects through myself

what have i done to deserve this? […] / build it up, break it down, we built this: it’s ours.

I seem to have a song of choice that gets put on repeat during ER visits: this was July’s. However, five months later, I used a lyric from this song as my mirror mantra this past week. This song not only moved through the ten hours in the ER with me, but also spoke to finally being told the following week that my ultrasound had revealed a fibroid as the probable source of my bleeding and, consequentially, the cause of my “chronic anemia”—I had anticipated it, but your doctors can’t treat what they don’t know: I was “ready to go to war on this shit”. The song also really spoke to me of the psychological aftermath: you said it would never find out where i rest my head at night is rather reminiscent of the lines from The Resolution, “i can hear the sound of your voice still ringing in my ears / i’m going underground, but you’ll find me anywhere i fear”: it’s about though the battle is done, it stays with you. Even when I was asleep, sick or in an intermittent state of healthiness, sleep was only an escape, but laying awake in the dark can be the hardest part of a day.

Like Feelin’ Good, I played this song after I released myself from my former gynaecologist’s care—moving forward, the thought of a ghost brought me to life. It was at that moment, four months after this specific ER visit, that I realized I was that ghost. I was not myself; the light was around me, but not in me. A more tumultuous process than anticipated, recovery has been about recapturing that light so that not only can others see it… so that I can feel it.

 

Part three of this post will be up in the coming day or two—stay tuned!

I often sport products made by the awesome Ms. Donna Annese, the creator of Tallygear. Regardless of what kind of small items you’re needing to carry around with you, if Donna doesn’t have something to suit your needs on her site, she’ll think something up as quickly as you can ask for it! Donna launched Tallygear–named after her daughter, Tally–after creating the original Tummietote band: a fun way for Tally, who has type 1 diabetes, to carry her insulin pump and other necessities, but also allowing a lot of freedom. The tummietote band is comfortable, flexible, and most importantly, attached to me. For kids, but also other (disorganized?) adults like myself, the fact that I’m not putting my bag down anywhere means that I’m not forgetting it anywhere.

Unless I need a backpack, thanks to Donna, I basically never have to carry a bag anymore—for quick trips out of the house or workouts, I can stash my inhaler, keys, debit card(s), phone and whatever else into a tummietote band or belt and roll. For longer ventures, like field trips at work or if I need a bit more stuff with me, I LOVE the medical supply tote (formerly called the Hipster Pack)—I can fit multiple inhalers, an aerochamber, and several other small items inside, and barely notice it. To add to the fun, I also have several “super cool” headbands, and medical ID wristbands also made by Donna.

Several months ago (as you can tell, my blogging has been scarce—I intended to write this months ago!), Donna made the Dexcom G4 case. I commented on one of her posts that I’d love to see something similar to toss an inhaler (you know, for days where I need even less storage than the tummietote!) . . . and, she made it happen! I picked some fabric, and my wish was her command—I found not only a brightly coloured clip-on inhaler case, but a black one, in my mailbox a few weeks later

 

I love this thing. I usually keep it attached to a belt loop (however, tutus also have nifty little ribbon loops inside supposedly for hanging, but also likely useful for clipping-ness—in the above picture, I’m wearing black jeans under the tutu, and though you can’t see the belt loops, it’s attached to my jeans). The tutu method, however, also allows for the case to be attached and hidden underneath. In addition to my Ventolin inhaler, I usually have a bus ticket inside (or, I did until I got an iPhone, which is more convenient for storing bus tickets in the case of than the BlackBerry was), and occasionally a stray Concerta if I’m going to be out at noon when I take my midday dose). I also usually have a house key clipped to the carabiner (because that is mostly the only key in my life other than my work key). Contrary to the above picture, at this point I usually have it clipped at my side, and in that position I barely notice it.

Mostly, though? Regardless of the colour, it’s surprisingly inconspicuous! I work with kids, and either they’ve just learned that’s probably my inhaler, or they just don’t really notice it.

I’m banking on inconspicuous, though. Those kids LOVE my neon squares Hipster Pack—and I’ve even had random kids I don’t know tell me how cool it is. Well, girls anyways. I’d probably have to get some t-rexes or something* going on for the boys to exit their own little world. (*I just racked my mind for three minutes and can’t seem to determine what boys are into at present. Previous seasons it has been Deadmau5 and LMFAO and Minecraft, but I am apparently no longer with it.)

Thanks, Donna!  If you haven’t already, check out Tallygear to discover more fun ways to store your stuff—if you don’t see it, dream it up and get in touch with Donna—she’s amazing, and she’ll make it happen!

 

Disclosure: I received the inhaler cases, as well as other Tallygear products in the past from Donna for free. I was under no obligation to blog about the products, or provide a positive review. There’s a reason I keep going back, people: her stuff is quality, and I need more colours and designs! :]

well, i started this story in the middle of the page . . .

sugarbuzz, marvelous 3

The day before my birthday, I shared the first four months of the 2013 soundtrack—an undertaking you can read more about the origins of in the original post. On the eve of twenty-two, little did I know how much differently I would perceive not only the year, but the soundtrack that had been already created as 2013 closed off. The dawn of a new year is the subject of an upcoming post, so while you can read the original responses in the post linked above, I am starting the journey again from scratch—same songs, new songs, fresh slate as the story continued taking on life.

The Resolution, Jack’s Mannequin.

This song has woken me up nearly every day for the past year. Originally a call to self-change, intentionality and hope, as the year progressed it became more of an anthem as Andrew McMahon from Jack’s Mannequin had perhaps intended it—an anthem of survival; and an ironic foreshadowing.

there’s a lot that i don’t know, there’s a lot that i’m still learning / when i think i’m letting go i find my body it’s still burning / and you hold me down, and you got me living in the past / somebody pick me up: somebody clear the wreckage from the blast.

Line two: “when i think i’m letting go, i find my body it’s still burning”. These were among the last words moving through my head as I was medicinally lulled to “sleep” with two IVs in my arm and a mask suffocating me, mere hours after being pulled off the ER bathroom floor and into resuscitation. These thoughts are the ones that reverberate in my mind: the survival is what has me preoccupied with rewinding these moments.

i’m alive, but i don’t need a witness to know that i survive / i’m not looking for forgiveness—i just need light, i need light in the dark as i search for the resolution.

There are very few songs that the next piece hits me as hard as the first: The Resolution is among that rarity. I’m not looking for forgiveness. As I’ve written about, guilt is not uncommon being sick. It’s not just recovering and getting back to life physically. It’s realizing that despite having no control, the things that happen to us as individuals affect many people around us. Figuring out how to shed that guilt—or decrease it—is huge.

I still need that light: I’ve found the physical resolution, but the emotional one is a harder obstacle to climb over.

and the bars are finally closed so i try living in the moment / till the moment it just froze and i felt sick and so alone: / i can hear the sound of your voice still ringing in my ears / i’m going underground, but you’ll find me anywhere i fear.

This—this is the aftermath. No longer being able to find distraction encompassing enough to escape the reality constantly following me—unlike most situations, I simply can’t take a step back from my own body. Every quirk, oddity, and even normalcy after having this fairly sudden resolution to months of medical turbulence can be extremely confusing.

it’s a long way back from hell / some stories i will never tell / and i’m almost home.

This resolution: it’s not a goal, a wish, a hope. It is a process. I am living the resolution.

Even If It Kills Me – Motion City Soundtrack

Simply the title of this track is really reminiscent of the medical aspects of my year, but it made it to the soundtrack sometime in late January at about four AM being the only sober person at a party. It was also sometime in the span of time I was having the psychoeducational assessment done. There’s a lot of aspects I can’t really speak to, but so many pieces were just very, very relevant.

i’ve got a lot of things to do tonight / i’m so sick of making lists of things i’ll never finish […] / since early 1995 all my shit has been in boxes / but if i had a little more time to kill / i’d settle every little stupid thing, yeah you’d think that i would. / but i’m too tired to go to sleep tonight, and i’m too weak to follow dreams tonight: for the first time in a long time i can say that i wanna try to get better and overcome each moment in my own way.

That last line was a big one: overcoming moments in my own way. Which once again became a really important thing to underscore after my ADHD/LD diagnosis.

winter is a killer when the sun goes down / i’m really not as stubborn as i seem, said the knuckle to the concrete.

i’m not saying that i’m giving up, I’m just trying not to think as much as i used to: ‘cause never is a lonely little messed up word—maybe i’ll get it right some day. 

i so wanna get back on track, and i’ll do whatever it takes: even if it kills me. 

 Feeling Good – Muse (cover)

I can’t paint the original picture of this song choice any better than May’s post: “There was a span of time that I allowed certain people to control my thought process, and I expended far too much energy on this–I struggled to let go of something that I had created that had become not what I had visioned and out of my control, trying to help people change who did not want to change. As soon as I was forced to let go of it . . . my life, my thought process, improved further in so many ways. And for that, I am grateful. Each day is new–and that makes me feel good.”

The new moment that unfolded, however, was when I had my final meeting with my former gynaecologist, the man who “oversaw” my care through three blood transfusions. I truly believe tried his best, but thank God somebody else’s best was better. 

it’s a new dawn, its a new day, it’s a new life for me: and i’m feeling good.

Because there’s something really kickass about running down three flights of stairs and barely being able to get your earphones in quick enough to make the moment complete with the right song about moving forward.

when the day is done: and this old world is a new world and a bold world for me. stars when you shine, you know how i feel.

yeah, freedom is mine, and you know how i feel.

Typical – MUTEMATH

Even now, as soon as this song comes on, I am quickly transported back to March as I wrapped the learning assessment process and got ‘the verdict’. Rather than deviating from the social typical, it was really about moving out of my own variety of typical—and, as I said to the accessibility services assistant Monday, “working with [circumstance] instead of against [it].” If anything, I just wish I had the process completed sooner, because I think it would have changed a lot of outcomes—but, maybe then it wouldn’t have changed me in the right ways either.

come on can i dream for one day, there’s nothing that can’t be done / but how long should it take somebody before they can be someone? / ‘cause i know there’s got to be another level / somewhere closer to the other side / and i’m feeling like it’s now or never: can i break the spell of the typical?

because it’s dragging me down / i’d like to know about when—when does it all turn around?

Workin’ It Out – Hilary Duff

This one, the cause for a deviation from a five-year Hilary Duff hiatus, was really about persistence and finding answers to questions, and how much that process, which really was defining of my year, sucks—while the implied theme is relevant, the lyrical mediocrity is quite unfortunate.

some days it all makes sense to me / some days i just don’t wanna know why. / i’m not giving up, no. / gonna stand up and shout it: no way / i’m not slacking off, or backing out, or cracking up with doubt: i’m working it out. / sometimes, i’m just surrounded by friends—sometimes we’ve never met.

That last bit about friends I’ve never met? Those are among the most important people in my story this year. I am blessed by so many amazing people who I only know through this crazy thing called the internet—who were among the biggest sources of support through the craziness I have made my through this year.

The Year of Discovery – Tess Dunn

A very fun, poppy tune, this is extremely reminiscent of my year: figuring things out, working with little new but more being uncovered, and taking time to trust the process.

so we’re calling it the year of discovery / but i haven’t found a thing / but don’t you worry, ‘cause i’m not far behind. / i’m not trying to keep up with the times, i don’t really see the point / the new year’s ringing loud and clear…

i searched the whole world to find all the missing pieces of me / but they were already there, not put together properly / i gave my all up and i hoped for something more / and even though everything’s missing, i’ve never been happier before.

there’s always something missing, can’t seem to put the pieces where they belong / but now for once, i don’t feel incomplete / this is my year of discovery.

I can’t say much more to it: it’s about finding answers to unasked questions and ending up more complete because of it—“she had answers to all the wrong questions / it’s funny, these answers are all that i need.” (caldecott tunnel, something corporate).

Caves – Jack’s Mannequin

This song, seven months later, can still actually be really tough to listen to. Eight minutes of piano, melody, and words that fit the feelings of those moments almost perfectly. I spent an inordinate amount of consecutive hours listening to this track on repeat in the darkness of the back corner of the emergency room, achieving little sleep between the atmosphere, my nurses taking vitals and changing my IV bags between blood and fluids, and the constant need to go to the bathroom induced by the Lasix and dragging my IV pump alongside me. Once again: my circumstances and Andrew McMahon’s were very different—but they both came down to anemia leading to treatment, being reborn by donors and doctors. And, the music being what pulled us through…

i’m lost somewhere in between alive and living a dream / no peace, just clicking machines […] the walls caved in on me.

 and she stings my arm in the night, i lay still—still i’m ready to fight / have my lungs, but you can’t take my sight. / the walls caved in tonight. / and out here i watch the sun circle the earth: marrows collide in rebirth […] / the walls fell and there i lay saved.

the walls are caving in as far as i can see / doors got locked for sure / there’s no one here but me / beat my body like a rag doll […]

 The words are deeply resonant: the piano solo is what was most explanatory this chaos at the time. In finding the resolution, however?

 i fought a war to walk a gangplank into a life i left behind / windows leading to the past, think it’s time i broke some glass, get this history off my mind.

 More didn’t hit me until September:

everything’s a piece of everyone. as far as i can see—walls are caving in, doors got locked for sure, but i see these doors have keys.

The blood of the donors that saved my life on multiple occasions? The cells may die out in four months, but my body’s physiological response to it lasts far beyond: I doubt I’d be alive right now without the beautiful people that chose to donate blood, and I cannot convey my thankfulness enough. This song, unlocking those doors, and connection—they persist beyond the hell I spent more than eight months climbing out of: I’m still on that journey.

———- 

Removed track: Stronger – Kelly Clarkson.

———-

i’m alive, but i don’t need a witness, to know that i survive, i’m not looking for forgiveness—yeah, i just need light, i need light in the dark as i search for the resolution . . . 

To be continued.

Today, I’m happy to share a piece from Justin Castillo, founder of Haika Clothing Company. If you’ve spent some time here, you’ll know I’m a big fan of t-shirts, and even more-so when there’s a story behind the shirt. Today, a true testament to put in the Badassmatics file, Justin shares how he got started, how he refuses to let asthma hold him back from living an active life, and hopes the message within his clothing will help others with asthma live the same through provoking thought and healthier lifestyle choices (though, I can’t say I’d condone his act of leaving his rescue inhaler at home–keep that shit with ya, people, it’s important!).  Thanks, Justin!

———-

It all started in March 2013. 9 long months ago, but for me seemed to go by in a blink of an eye. I was reading an issue of Entrepreneur Magazine and learning about all these companies starting from nothing and seeing where they were headed. I thought to myself, “Why can’t I think of something?” I kept seeing all these clothing companies that would donate or give back to organizations and charities such as breast cancer, autism, the fight against hunger, etc. These are all great causes, don’t get me wrong, but it seemed like everyone was helping the same cause. Also, the shirts these companies would offer, just didn’t fit my style. All they would sell were message tees. For me, I like to wear active/streetwear clothes that fits the surf & skate demographic. My “Ah Ha” moment came when I realized why don’t I create a something that supports a cause I am passionate about and offers t-shirts that fits my sense of style. Thus, Haika was born!
Why asthma you ask? I have had it since childhood, so it made perfect sense. I searched all over the internet and couldn’t find a anyone that supported asthma, in terms of a clothing company. So, I combined my two passions: helping those with asthma, and, creating a clothing line that fits my sense of style. Instead of creating message tees, I wanted to create something where the message was already in the brand. Don’t let asthma take control of you. You must take control of it! I want people to do what they love, and not let anything get in the way of that. Whether is it asthma or not.
I’ve played competitive sports, such as baseball and football, throughout my whole life. Of course there were times where I would induce an asthma attack, but I didn’t want that to be an excuse of why I couldn’t continue to participate. I felt that those experiences made me stronger physically and, more importantly, mentally. In some sort of weird & twisted way, i’m glad to have asthma. In a sense of not to take things for granted.
I took it a step further and incorporated a more healthier style of living by exercising and eating properly. I found out that this has dramatically decreased the use of my inhaler and asthma attacks, as well as increasing my energy level. All I want to do now is get out and enjoy the outdoors. I still take my preventative inhaler two times twice a day, but I can leave the home comfortably without my fast acting inhaler. To know that you have it that well managed and under control is a big step and confidence builder for anyone who has asthma.
From idea to reality, I want to see Haika as a company and project, grow not only throughout the U.S, but worldwide. With help of awesome people like Kerri and Stephen we can spread this message and help millions of people with asthma by supporting research and study efforts. With each purchase, $5 is donated to an asthma organization or charity in our customers community. That way they can have a direct impact and feel great about what they are doing! Visit haikaclothing.com for more information.

———-

Beyond a potential conversation-starter, 20% of your purchase of a Haika Clothing t-shirt will go towards an asthma-related non-profit organization. If you’re working in the best interests of people with asthma and are interested in partnering with Justin, drop him an e-mail!

–i swear this place is haunted, a skylit drive.

It’s been four and a half weeks since I last blogged. Apparently losing a week of your life/near death experiences suck a lot more time out of life than just that one week.  For the record, I am staying more-or-less in-tact academically which is [very] surprising. I only needed to get one deadline pushed back, which was a deferral on my Sport in the Ancient World midterm. Six extra days to work through the things I missed meant I got a 78% on that test, which was much better than I’d anticipated even had I not gotten sick. I’m sitting at 100% in my Developmental Studies class (SERIOUSLY.) and got 63% on my Disability Studies paper (I am fully intending to argue that one).  As soon as I got back on my feet, I had to start drowning in school again. I had a full three days of all day work and nights till 3 AM on the two aforementioned papers that were the same week as the Sport in the Ancient World midterm was SUPPOSED to be (had my amazing instructor not granted my test deferral I’d have been screwed).

Other than academics, it’s been a hell of a few weeks. Two of the chaos producing things are so worth it: getting my Special Olympics season off the ground (six confirmed athletes, two unknowns, two coaches and five program volunteers: I need more athletes!) and planning a Team Asthma event for Sports Day in Canada. Things are fortunately falling into place but I now have five weeks to promote this event and get things off the ground. It never stops (thank God).  One of the two other chaotic things, however, was not anticipated and not a welcome situation, and I still have yet to figure it out.

I saw my primary care doctor two weeks after surgery. To say it sucked would be an understatement, and I am looking for a new doctor. To start, we discussed nothing much relevant to my post-surgical state–had I not been as angry as I was, I’m sure we wouldn’t have discussed it at all. I went in and tried to stay civil, and asked about flu shots. Flu shots are civil topics of discussion. I then asked if she would refer me to Alaa, the doctor I saw at the hospital who did my surgery. Through the whole multitude of gynaecologic related shit, my gynaecologist had been very available and more than happy to see me any time I needed–what he wasn’t, was action driven. He also had the ability that is probably very helpful in dealing with pregnant ladies to make a person very calm (and perhaps he should reconsider a career in something like criminal negotiation because it’s near impossible to get mad at the man), which makes it a bit hard to get mad at a person. However, he also dismissed my questions regarding the fibroid, saying that it was small and shouldn’t be causing my problems. Considering under his care I received multiple blood transfusions, that in itself should be enough to warrant a referral elsewhere. It wasn’t, apparently. My primary care doctor refused to make the referral until she “receive[d] the pathology report indicating [I] need ongoing care,” but apparently I didn’t have to see my old gyn again if I “didn’t want to”.

This is where I lost it on her. “I don’t CARE what some report says, I WANT ongoing care. He was apathetic towards finding the root of the problem from the beginning, and even once it was evident refused to deal with it and book surgery until my mom called him. That’s not okay. This time I almost fucking died. I shouldn’t have to spend ten hours in the ER prior to going into hypovolemic shock less than two days after a blood transfusion, and require resuscitation before I get proper care. How is that acceptable? That’s absolute bullshit.”

That about ended the appointment. I can’t say she really responded to any of it, but it certainly didn’t get me a referral anyways. I briefly discussed the weird inspiratory pain I’d developed following surgery (I was betting and she agreed that it was just a muscle strain from coughing) and requested to go for a chest x-ray to rule out anything bizarre–honestly, she refused, and asked about pain killers at which point I lied and said I’d tried the go-tos (I’d really only tried Naproxen which did nothing), telling me “Take two extra strength tylenol every four hours for three or four days–if it still hurts, come back in and I’ll send you.” Seriously? Not going to happen. Why on earth would I OD on OTC pain meds for really minor pain?

I got a requisition for blood work, but I left without booking a follow-up appointment and hoping I never had to go back in there. I got a call the next day saying my hemoglobin was 93.  The downfall of chronic disease is I need asthma medicine to live–and I kind of need a dealer.

—–

Given the inability to secure a referral from my doctor, I called Alaa’s office myself the next day. I left a message not anticipating anything, explaining who I was, that I’d seen Alaa in the hospital and he did emergency surgery on me, that my primary doctor refused to make me a referral, and that I would really like to see him for ongoing care.

Two hours later I was shocked to see “DC OB/GYN” pop up on my caller ID, saying “Dr. Awadalla would be happy to see you for follow-up and ongoing gynae care.” I have an appointment on Tuesday.

I began the quest to find a new primary care doctor, which has been quite futile. I have a bit of a deadline of December 5th [when I apparently long ago booked a follow-up appointment] unless Alaa or my psychiatrist will refill my asthma meds for me (ADHD meds appointment with a side of bronchodilators?).

—–

Last week, after the appointment being pushed off for nearly a week, I saw my old gynaecologist. Ready to give the man shit except, damn, he’s too nice.

“So, they removed a fibroid, eh?” I told him he had certainly been informed of it.

However, he gets huge props for the fact that the second question of the appointment, which certainly made me soften a bit: “Is Dr. Awadalla taking over your care?” When I said yes, he replied “He’s a very good doctor.”

“Yeah, I really like him.”

At this point I had to start answering him in more than a few words. He, I swear to God, asked “Have I seen this ultrasound? Who ordered it?” I reiterated that he had seen the ultrasound as both myself AND my mom brought it to his attention. “A submucosal fibroid–in over thirty years of practice, I have never seen that type of fibroid in a young person–they’re rare.”

Then, he apologized.  He apologized more than once. If you are going to majorly fuck up despite being a kind and skilled person, there is no way you can fix that: a sincere apology, however? It’s as close as you can get sometimes. He told me once again “I’m sorry we put you through all of that”, and I could genuinely tell he did feel really bad about what had happened–what he had missed, what he had overlooked.

“I accept that. But the only reason I came in today was so that I know that you know exactly what happened: so that you realize a week after you told me I didn’t have to come back for six months I was in resuscitation for hypovolemic shock. It’s not okay: it may not be the typical, but it happened–I’m proof of that. So next time you have a young person in here, presenting like I did, please consider it. Because I don’t want anybody else going through the hell that I had to go through.”

With that, we left the room.  And I even said “thank you” on my way out.
I booked it down two flights of stairs, finally feeling free.
I dug my iPod out of my backpack, and scrolled through.
freedom is mine, and you know how i feel: it’s a new dawn, it’s a new day, it’s a new life for me . . . and i’m feelin’ good.
feeling good, nina simone [muse cover]
Shuffle, ever appropriate, interjected:

but i am the reason that i will stay alive […] every now and then, i think about you: it’s bringing me closer to closure–every now and then i know it’s over. […] take everything you need and move on. we are the answer to the broken breaking through–take everything from me: ’cause i’m not dying, no i’m not dying today.

the energy, audiovent

Because never again do I want to be where I was.

the thought of a ghost brought me to life.

I was that ghost.

I’m moving forward now.

i swear this place is haunted, a skylit drive

Here’s to moving forward.

Again.

Always.

an emergency! / hence the chance to emerge / i’m a seed on the verge / of becoming a tree . . .

[…] most eyes will see a mess / but good things coalesce / when yeasayers can see.

avalanche, sons of the sea

August was apparently too good for a repeat.  Out of the last seven months, I’ve gotten one good one. One normal, healthy one.

Disclaimer: If you don’t like lady bits, or blood, or hospitals, feel free to stop reading right now.  Regulars over here know I’m transparent, and I think this is the epitome of that.  Also, hi family, I swear a fair amount in this post.

At the end of August, my hemoglobin was a beautiful 123. Normal. I’d started having some light spotting after six consecutive weeks on the hormone pills, which my doctor and I agreed was normal–he said if it got any heavier to take a three day break to allow my body to bleed, and then continue, otherwise finish the pack and take a few days off before starting again. He agreed things were going well–he didn’t think the small fibroid we’d discovered via ultrasound in June [and they had failed to tell me about until after my transfusion in July] needed to be removed, and he–at the last minute before I could question why–freed me for six months and slipped into another room.  I left without booking a follow-up appointment. I stayed on the pills. I went on with my life.

A couple weeks later, despite being on the pills, I started experiencing intermittent bleeds that were quite heavy. Most were short lived, some were not. Once again, the advice from my gynaecologist was the same: take a 2-3 day break from the pills, go back on twice a day. Fine. Let’s do this. I had taken my morning dose already, so I skipped the afternoon dose on Thursday, with the intent to go back on Sunday.

By Saturday, I knew things were not passable for “okay” anymore. I also knew that Wednesday, Thursday and Friday. But, I’m also unfortunately enough of an ER veteran at present . . . to know that I was not sick enough to go in and receive prompt treatment. I go to the ER when I am really sick, I do not go there any time before I absolutely have to. My heart rate was high [from anemia/losing blood volume], but I didn’t know how bad my lab values were. I opted to, for the first time, go to Urgent Care. I figured that if nothing else they would refuse to treat me and send me to the ER, or give me some concrete numbers to go off of.

I arrived at Urgent Care with a letter of introduction in my hand explaining my medical history [best choice ever to make that] and a heart rate of 155. I got sent to the back immediately where they ran an EKG, They drew blood. The doctor loved my intro letter, and wandered off with it somewhere.  They hooked me up to monitors and we waited for my labs to come back. Verdict: Hemoglobin of 84–a bit low but nothing dangerous in my mind–and my heart rate lowered significantly at rest and wasn’t sucky enough to visit the ER–the 155 was higher than anticipated, but it did go down once I was laying down. I was sent home with a plan: return in 24 hours for blood work OR if I had even a single episode of bad bleeding, go straight to the emergency room. Due to the past experience with recommendations to go to Health Sciences Centre [my perception: scarytown], we discussed that option with the doctor, who assured us that either HSC or St. Boniface Hospital were good choices–which made me a lot more settled as I am extremely avoidant of HSC.

Sunday

The next morning, that piece of advice proved well. I hadn’t had a good night with regard to the bleeding, but it wasn’t [to me] severe enough to go to the ER in itself. However, my heart rate had not improved. I gave in and said “Let’s go”, and grabbed my already packed bag, intro letter and health card, and showed up at St. Boniface Hospital by 11:30 AM.  I waited in the line for triage for very little time–some very smart person chose to triage the triage line. When I go into the ER, I never really look sick [and I'm always too calm]. As the nurse goes down the triage line, I can see the girl beside me giving me this “you don’t look sick” type look. When the nurse gets to her, she says “Oh, I have a really bad head cold.” The nurse takes a step to me, I tell her my name and respond “I’m having severe vaginal bleeding and tachycardia.”  I’m not even sure what girl beside me thought [or understood] of that, but I know she must have been pissed off when the nurse immediately pointed me the open triage desk!  Once again, with a heart rate of 155, they immediately walked me to the back.

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I got lucky: the ER doctor that shift was the Emergency Department Director at St. B.  Fondly nickanmed “Dr. Business” at that time, he came in quickly and I gave him the lowdown: I’ve had three blood transfusions since May totalling seven units, this is what’s going on, this is why. He, being Dr. Business, immediately called in the gynaecology resident.  IV inserted, blood drawn, EKG done, monitors hooked up, IV fluids rolling in. Within an hour of arriving, I’d been transferred to a more private treatment room, where Dr. Business was too impatient to wait for gynae and opted to call in a nurse and do a pelvic exam himself [for the record, he needed a lot more practice, and I suppose it is fortunate that he got a round of practice on this girl with a decent pain tolerance--granted, I at this point was getting so sick of being in and out of the ER and the inability to live my life that we definitely asked if more immediate surgery was an option--which he did not believe it was].  Within another hour, the gynaecology resident had arrived.

Seriously, I loved this woman from the moment I met her–before I knew how instrumental her role in my care would be. She introduced herself as Stephanie, we did a brief history, we talked smartphones, and she did another exam [which was much less painful than the one an hour before]. She took over from there, got me moved into observation in the back while she figured out a plan of attack.  She agreed that immediate surgery wasn’t going to happen, and I finally had to accept that.

My hemoglobin had only dropped a small amount at that point from the day previous. It was still 82, but because of the bleeding [I was on the pill break at this point to pacify everybody, but the bleeds were still intermittent], it was an option to transfuse if I wanted to. She also repeatedly made the point that “Yes, you do need to take pill breaks, but WE need to support you through them.” I could have hugged her. We together decided to do another transfusion because of the unpredictablity of the bleeds to give me some wiggle room, but she also started me on tranexamic acid to reduce the bleeding, and upped my pills to 3 a day for two days.  I was feeling pretty sick so she ordered some anti-nausea meds [which then took me an hour to get since I didn't opt in when the nurse offered them and then he went on a break ;). Had I known they would have had to put an extra IV in to shoot the good drugs into me and were just going to give me Gravol, I would have sent my mom down to the pharmacy and not waited an hour--no way was I letting them put a second IV in.

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I got released: Happy I had some fresh blood on board so I'd be feeling better and my heart rate would gradually come back to normal. I was hopeful that the new medication would, after a few days, prove to make a difference and I knew I just had to tough it out until then.

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Monday

Monday was a rough day.  I was really emotionally screwed up and--like the previous Thursday--simply could not cope with anything. I felt sick from the transfusions. The bleeding was worse but not terrible, and by late afternoon, I actually did feel some hope that the pills were working as I read the tranexamic acid worked quickly as I had a few hours of reprieve from how shitty things had been earlier.

11:00 PM rolled round. It was like a switch flipped. I was bleeding much, much worse than I ever had [I pretty much literally couldn't leave the bathroom].  I told my mom we needed to go back to the ER, and by 11:30 we were in there–I went straight from the car to the bathroom to temporarily deal with the bleeding, then proceeded to triage.

Winnipeg-20130924-00563.jpgTriage was probably among the worst experiences of my life at that point. I’m not feeling good, I’m hemmorhaging worse than I ever have in this disaster, and when i get called up to triage, I get registered, but there is no triage nurse there! I waited, I think, probably 10 or 15 minutes for one to appear, and in the meantime had to listen to some healthcare aide or something fucking order food behind the triage desk! The nurse was nowhere in sight, and I felt like absolute shit. It was kind of a sign of things to come, unfortunately.  Though I couldn’t reach the machines to get any readings, I finally put the saturation/heart rate probe on my own finger, wrapped the blood pressure cuff around my arm, and stared at the thermometer knowing that I didn’t know how to put the sterile thing on it [and knowing I couldn't reach it].  That FINALLY got the nurses’ attention who sat down and pressed the buttons on the machines, stuck the thermometer in my mouth and went over my intro letter.

My heart rate was an all-time-high for me of 169 beats per minute [they charted me at 170]. They led me back into a gynae treatment room, where I immediately proceeded to the bathroom, puked, and fucking got blood absolutely everywhere–despite the fact that I was wearing two feminine products meant for heavy bleeding, everything was already less than useful despite changing them a half hour earlier when I’d arrived at the hospital. I went into the room to put the gown on as I made my mom rifle through the cupboards for the “fancy hospital underwear” [as Steph the Awesome Resident had jokingly called it on Sunday] and dug through my stuff for a new pad because really, I didn’t give a shit if I bled all over the hospital’s stuff [by the end of this process, the floor of my room was quite unsightly as well].

Tuesday

The nurse eventually came in and did vitals, put an IV in and drew blood. Then, I am not even joking, they proceeded to not do a single effing thing for the rest of the night. I requested nausea medicine and painkillers at about 4 AM which the doctor I’d seen briefly said they would chart for me–I got a shot of Gravol in my IV, but somehow the pain meds didn’t go through–I fell asleep for an hour or so thanks to the Gravol, and woke up a bit after 7 to my mom talking stupid loud on the phone.

I went to the bathroom and felt a bit dizzy, but it wasn’t even as if the nurses were in there asking me how I was doing or checking vitals, so I didn’t report on it.

Around 9, I went to the bathroom again. And this, is where all hell broke loose.

I felt fine getting up out of bed. I felt fine walking to the bathroom.  I peed, and evidently my uterus hated this as I once again lost a ridiculous amount of blood. I started feeling dizzy, but was still extremely coherent. You’re okay. You just have to get back to E5. It’s not far.

I got to the door. I fell to the ground.

That was weird. Just need to get back to bed.

I stood up. I fell down again.

At that exact point I guess they determined I’d been gone too long. The nurse opened the door, and said “She fell in the bathroom, I need a stretcher over here.”

She helped me up and onto the stretcher. I have the bruise on my upper arm to prove it. “Which way do I need to lay down?

“She’s diaphoretic and tachypneic,” [translaton: sweating and breathing rapidly---I didn't at the time know what tachypenia was, I was able to recall the meaning of diaphoretic which proves that my body hated me but my brain still worked] “toilet is full of blood, we need to get her into resuscitation.”

“She needs her glasses.” [I knew things didn't look right, but in all of that, I actually hadn't noticed that my glasses had fallen off my face, I just thought my eyes were messed up. Apparently though i was coherent, I looked a lot less confused after they gave me my glasses back, considering my eyes are super bad].

Seriously aside from the glasses, coherent? That was me. “Can you grab my bag from the floor, please?  Does my mom know where I am?

I got into resuscitation. Immediately they were pulling at my gown sticking electrodes all over me and running an EKG, firing up the monitors. IV fluids began rapidly, and they dumped them in quick. “We need gynae in here.” They repeated all the tachypenia jazz and I was like “I doubt if it makes a difference but I haven’t taken my asthma medicine properly because I wanted to keep my heart rate down.”  Pretty quickly I was back and with it. My breathing normalized with the fluids [hypovolemic shock . . . is less than a fun time. If you want to be a nerd about it, I could be incorrect, but would assume I was in either Stage 2 or Stage 3].

Stephanie came down to see me. I finally got the damn painkiller I wanted at 4 AM. She told me that she was going to strongly advocate that we get me into surgery today.  It could be two hours, it could be eight hours, or even the next morning, but she wanted me in there.

Eventually some proportion of the fluids made their way through my body–my cheerful snarkiness was coming back at this point because I was like “I have to go to the bathroom, and I assume after last time you’re not going to let me go there, right?” [They allowed me to keep my bedpan free streak in-tact, thank God, and brought over a commode to the bedside. The nurse helped me move with all of the monitors and because surely they were convinced I was going to fall over when I got up--also I must have still been bleeding a bunch at this point because they told me not to worry about the blood on the floor and helped me clean up. I AM SO CLASSY--Hi doctors, this is why you should take care of me BEFORE all this extremely classy shit happens].   Also, proven by the snark, I was evidently feeling better, too.  My hemoglobin was down to 63 again despite receiving two units of blood less than 48 hours prior.

Stephanie came back with the attending doctor in tow. He, like Stephanie, introduced himself simply as Alaa when we shook hands, which was a big respect win for me. We discussed the surgery, and she handed me the form to sign. I didn’t even read it. “So, this says if I die, it’s not your fault, if you perforate something and have to take my whole uterus, I’ve consented to that–I’ve told you, you can take the whole thing RIGHT NOW but I know you won’t do that. Signed, CUT ME OPEN.”

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“If I’m doing surgery today,” Alaa said, “Stephanie is going to have to buy me coffee.” My mom was like “I will buy you coffee!” i was like “I’ll buy Stephanie coffee.” My mom was like “I’ll buy them BOTH coffee.”

Stephanie ensured they had a couple units of blood on hand for following surgery [Nurse: "We're going to have to draw blood again." Me: "I had a transfusion on Sunday. Isn't my crossmatch good for four days? I don't think you need to draw blood again." She was like "I'll have to check that, but I think you're right." :] Turns out? Totally right.]

Surgery in itself was actually simple, and they didn’t even have to cut me open [you know, as per my demands ;)]. As my usual gynaecologist had discussed, I was getting a hysteroscopic myomectomy–they go in with a scope with a camera through the vagina, snip out the fibroid, clear everything else out with a D&C, and that is the end of that. Considering I had a D&C in June under little pain medication [read: 400 mg of ibuprofen 4 hours earlier, and some numbing stuff in my cervix (are you people weirded out yet?)] and no anaesthesia, I figured being anesthetized for this it would be absolutely no problem.  Stephanie had the nurse put a urinary catheter in while I was in resuscitation, and then they moved me out to E3 until they had a room ready for me prior to surgery.  The question, however, then became why the heck was my catheter full of blood? Prior to the advent of the insane bleeding anyways, I was certain I hadn’t been peeing blood. She kind of just figured there was trauma on insertion and didn’t worry about it [and really, first Foley over here, I had no idea what it was supposed to feel like!]

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I took all my inhalers to ensure my lungs didn’t screw up during surgery [see the cap of the pink AeroChamber up there?]. They moved me upstairs to fill out a zillion pages of medical questionnaires. Within an hour I was down in pre-op awaiting surgery.  A nurse came by and deemed one of the IVs they’d inserted upstairs less than stellar [I had two in] and inserted a new one into my left hand, then pulled out the one they’d just put into my right elbow. Stephanie and Alaa came by separately, Alaa went over everything again and told me that he wished he was only seeing me with a baby inside me, and the anaesthesiologist came and talked to me about how they were putting me to sleep for surgery–as I’d hoped, they put me under general anaesthesia. Why recall anything if I don’t have to?

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Finally, they rolled me into the operating room, which was very blue and sterile looking, but not all scary or intense like on TV. Stephanie came in and was like “Seriously, we’re about to do surgery and you’re still smiling?”. Definitely.  They temporarily lost Alaa and were about to page him, and it turned out he was already in the room.  I moved to the surgery bed, they got me into position, and hooked all the monitors back up. They put the oxygen mask on, which I swore was going to freaking suffocate me so I spent several minutes trying to convince myself to not freak out with this thing suctioned to my face. The last thought I remember having before I was out? The line in the title of this post from the Jack’s Mannequin song The Resolution, which has been a recurrent theme of relevance during 2013, and very relevant even to that morning’s resuscitation situation

When I think I’m letting go . . . I find my body it’s still burning.

With my eyes blurry, I woke up in recovery. I now have two experiences under general anesthesia that I recall, and I woke up completely coherent from both of them. A nurse showed up at my bedside, and I asked her for my glasses.  She asked if I wanted a couple Tylenol 3s and a warm blanket. People, you do not decline the warm blanket. I wasn’t actually in pain, but I prophylactically took the T3s [and, considering they'd only let me have a few spoonfuls of ice chips before surgery, the water they gave me to take the T3s with was the best feeling thing ever, especially considering how my throat felt from the intubation].  Stephanie came in to see how I was doing not too long later, and they rapidly transfused another unit of blood before sending me back to my room. “You actually didn’t bleed much during surgery, so that’s good. And we solved the catheter issue. It accidentally ended up in your vagina instead of in your bladder. So, you’re fine, but it explains the blood.” Damn close together lady parts.

They finished the transfusion, though my IVs really weren’t working well and every time the pump surged a new drip of blood into my veins, it hurt. I had two lines, so I requested they move the drip from my hand to my arm–which they said was the line that didn’t work as well.  It hurt less though and was more tolerable, so I managed to convince them to keep it there.  They moved me back to my room, and after an hour or so they actually let me properly use the bathroom [then after that time they decided they wanted to monitor stuff, so I had to pee in the hat thing and then call them afterwards--really what did I care, at least they were letting me go to the bathroom now!].

Then, of course, they decided that they wanted a new IV, just in case. They left the one in my hand in, which hurt like hell, and proceeded to squish it as they tried at least eight more times to get me a new line.  Finally, after a bunch of pokes, getting my arms slapped to try to bring some veins out, and three different nurses trying, thank goodness, Alaa strolled in and said “Stop poking the poor lady! As long as she’s peeing okay and can eat, she’s going home in a few hours!”

I liked the man before, a lot, but this conversation with him just solidified that even more.  He once again sat down beside my bed, and pulled out a piece of paper and started drawing pictures.

“So, the fibroid is gone, and we left all your girly parts in tact. The surgery went excellent.”

That teeny fibroid that EVERYBODY from my gynaecologist to the people at the hospital told me couldn’t be causing my excessive bleeding?

Yeah, it was.

And that’s because since June’s ultrasound, the damn thing had grown from 2 cm x 3 x 3 [or something of that nature] to essentially having the ability to fill my entire uterus, at 5 x 6 x 8 [once again, of something of that nature].  That sucker was huge–fibroids, which are essentially an overgrowth of muscle cells fed by a blood vessel–cause different problems depending on where they grow on the uterus and their size. Fibroids on the outer walls may cause heavy bleeding but are often asymptomatic–if they cause heavy bleeding, they still usually don’t affect the cyclic nature of menstrual cycles–i.e. bleeding during periods may be heavy, but they still last for 5-7 days or less, and don’t happen with extreme frequency. Those ones may also push on different organs and cause problems like frequent urination or bowel issues.  My fibroid was submuscosal–the rarer kind, of course!–it was growing in the inner wall of my uterus and taking up all the space in there, and causing all kinds of problems. Two and a half years ago, I started getting my period every two weeks, which was at the time linked to how hormones might act in a nineteen year old’s body as I kind of fizzled out of the whole adolescence thing–reality, it was probably the start of a really teeny fibroid, which as it grew caused the bleeding to never stop and then as the growth continued, made the bleeds really severe despite being on birth control to not prevent babies but prevent bleeding.

My blood counts were probably still sucky, but I’d anticipate in the low 80s so since I wasn’t actively bleeding heavily anymore and my blood volumes had been restored to normal with transfusions and fluids, I was allowed to go home that evening after I ate something [pending I didn't throw up]. Alaa anticipated that my counts will be up above 100 within 2-3 weeks–”Go home, have nice steak!”

“I’m a vegetarian.”

“Oh, my daughter claims to be vegetarian. Then I cook nice steak, all crispy on the edges, and that is the end of that! Okay, no steak. You like spinach? Broccoli?” I agreed. “Yes, lots of spinach and broccoli, 2 weeks your blood counts will be all nice over 100.”

He got me to continue on the tranexamic acid until the totally bleeding stopped [so I should be done that today because with that and the hormone pills i'm so paranoid I'm going to throw a blood clot somewhere], and decreased me immediately to ONE birth control pill per day.  I was SO excited about that. I asked him if I had to stay on the pills, and while I didn’t like his response [because I don't want to be on them] I totally respected it: “If you were my daughter” [he has three] “I would tell you to stay on it, even if you’re not sexually active.” Ah fine, fair enough. They ordered me a liquids tray, and he told me I was good to go home as long as I could eat okay.

The nurse brought me Jell-O [the cafeteria was closed--regardless, best Jell-O I'd ever tasted, considering the circumstances] and juice [yay for people not thinking my request for half apple juice half water was weird], and went over my discharge instructions–only liquids for the remainder of the day, bland foods only the next, from there increase as I could tolerate. Much of the discharge instructions didn’t really apply to me, so there was little in regard to the take-home message: No baths or swimming for three weeks, no tampons for three weeks. If anything seems weird, call, follow up with my family doctor or gynaecologist in 2 weeks and have blood work done. Don’t make any major life decisions for 24 hours.

By about 8:00, they kicked me out. Which, was quite the surprise considering less than 12 hours earlier they’d been hauling me off the bathroom floor and into resuscitation.

The recovery from the surgery in itself was nothing to speak of. I’ve taken one naproxen in the last three days for a slight headache and to bring down the swelling in my hand, which is better by the day.  I took some liberties with “bland food” and opted to include grilled cheese and cupcakes [which I have received an abundance of thanks to the amazing Steve working magic all the way from California, and my lovely ladies at work--we understand balance here: hospital fills my body with salt in the form of IV saline, we counteract that with sugar in the form of cupcakes. SCIENCE, PEOPLE]. It’s really more recovering from the transfusions and whole resuscitation scene and the fact that because surgery didn’t come into the picture until last week when my mom talked with my gynaecologist on the phone, that I have been beating up my body really hard for the last seven months.

I take my pills. I wake up every day feeling stronger than the day before. I hope to start doing light exercise late next week after my follow-up appointment with my primary doctor–which is something I have been unable to commit to since January.

And I hope i’m off this ride. Because it’s not okay. It’s not okay that I had to get that sick, repeatedly, to get treated in a way that will actually work. It’s not okay that I could have almost died before that happened. It’s not okay that I have to have a deep knowledge of not only my own body, but also understand medical science and the inner workings of the medical system to get care–because most people don’t have that kind of knowledge. It’s not okay that my regular specialist refused to acknowledge all possibilities, consider other causes from the beginning of my treatment.

I’m getting onto a new ride. Because I got lucky.

When I think i’m letting go / i find my body it’s still burning.

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Thank you to Dr. DaSilva at the Misericordia Health Centre Urgent Care clinic for providing me direction and taking the best care of me possible on limited resources.  Thank you to Dr. Steigerwald, St. Boniface Hospital Emergency Department, and all of the numerous people who took care of me–names are far too numerous to recall, but also include Badi, my RN in CPRU. Thank you to each of the nurses and health care aides who found themselves involved in my care in resuscitation–amongst the chaos I cannot even attempt to provide thanks in an adequate or inclusive way.

To the gynaecology residents who were the true light amongst the whole situation through their compassion, clarity and determination, I cannot thank you enough–I saw three of you while I was in the ER, and though I can recall Marley and Stephanie, I am unable to recall the other wonderful resident who oversaw pieces of my care.  To Dr. Alaa Awadallah, OB/GYN, you were incredible and I cannot convey my thankfulness for your easygoing manner, compassion and ability to sprinkle a few laughs into a really difficult situation.

To my friends, family, coworkers and patient instructors: thank you for sticking with me the past several months, I’m sure I was less than awesome at times.

My biggest thank you, however, must be extended to Stephanie Appleby, OB/GYN resident. I am blessed that Stephanie and I crossed paths not once but twice, and without her, I doubt my prognosis would have been as good. She advocated strongly for me from the moment that we met, and I greatly question that without that advocacy I would be alive right now. Stephanie: You’ve got this doctor thing down–compassion, grace, humour and persistence. I am awaiting the day that I can be your patient again: healthy and hopeful as these are the things that YOU restored in me through your care . . . and apparently Alaa wants to see me with a baby inside me, but I’d let you steal that position from him :].

Here’s to moving forward for real–to a new ride . .. where the ups can far counteract the downs.

I haven’t filled out the 30 Things About My Invisible Illness meme for a few years. [To be perfectly honest, and not to start any debates, but I actually am a bigger fan of the word disease than illness. But that's another story--I feel like disease and illness are both states but illness often carries the connotation of "temporaryism"].

1. The illness I live with is: Asthma, anemia, uterine fibroids [and though not an illness, borderline ADHD]

2. I was diagnosed with it in the year: 2008 / 2012 / 2013 [/ 2013]

3. But I had symptoms since: 2008 / 2012 / 2012 [/ forever]

4. The biggest adjustment I’ve had to make is: Remembering to carry my meds with me.

5. Most people assume: That because the things I live with are common that they aren’t a big deal to live with.

6. The hardest part about mornings are: Making sure I have all the medical crap I need for the day organized [read: thrown haphazardly in my backpack]

7. My favorite medical TV show is: I don’t watch TV. But if I did, I still wouldn’t waste my time watching medical shit, I spend too much of my life dealing with it :].

8. A gadget I couldn’t live without is: Probably my iPod, not that it has anything to do with my asthma. [Though, it keeps the ADHD aspect of me organized :)]

9. The hardest part about nights are: Honestly? Remembering to actually go to bed at a proper time.

10. Each day I take __ pills & vitamins. (No comments, please) 7 pills–however, since my treatment doesn’t revolve around pills, I also take 3-4 inhalers and neb treatments as needed.

11. Regarding alternative treatments I: Am skeptical, outside of adjunctive exercise and balanced nutrition [something I need to practice more :)].

12. If I had to choose between an invisible illness or visible I would choose: Invisible.

13. Regarding working and career: I know that my asthma may change how I do things, but not limit what I choose to do! I’m very blessed to presently work in an amazing place with people who genuinely care about me–through a pretty bad asthma exacerbation last September, to like 3+ weeks (combined) off work through the spring and summer because of the anemia/blood transfusions/un-diagnosed fibroids causing me to bleed to death, my boss has never required me to submit a doctors’ note. How much my coworkers care is beyond amazing–we’re far more than coworkers :].

14. People would be surprised to know: I think there are a lot of things that people would be surprised to know about living with chronic disease, especially when you’re pretty young. I think it would surprise people that I very much work to hide my asthma symptoms in real life; I think it would surprise people to know how many [thousands of] times I’ve hidden in a bathroom to take my inhalers; I think it would surprise people to know how educated you have to be in this country to receive proper medical care.

15. The hardest thing to accept about my new reality has been: I’m not really sure this is a “new reality”. The reality is, I live my life with what’s thrown at me–and I think that’s what I’ve always done.

16. Something I never thought I could do with my illness that I did was: Really, I think I started tackling things after my asthma diagnosis that I never would have bothered with before. Simple things, but simple things that made me a better person. I think if anything, asthma made me more ambitious than ever feeling limited.

17. The commercials about my illness: Could not piss me off more. Take this drug and you’ll have perfect asthma control and frolic through the field of daisies with all of us in the Elusive Land of Perfect Control! I take three inhalers, 2-4 times per day, plus a rescue inhaler and nebs anywhere from zero to twelve times a day (on a bad day) and I still can’t run anywhere for very long.

18. Something I really miss doing since I was diagnosed is: Like I said, I live a much fuller life post-diagnosis. I can’t say that I miss living less ambitiously than I do now! So, I’ll go with breathing effortlessly.

19. It was really hard to have to give up: Once again, I say it all the time–”asthma may be a speed-bump but it’s never a road-block”. The only thing I really gave up was not having ridiculous lungs–and, I didn’t really have a choice in that, did I?

20. A new hobby I have taken up since my diagnosis is: Blogging, meeting people from the internet [ooh, dangerous! :)], exercise, and visiting my dear, dear friends at the pharmacy [kidding, dear God].

21. If I could have one day of feeling normal again I would: Feeling normal? I’m not sure I ever felt normal before I had all this weird stuff happening in my body–let’s be honest here, I’m rather strange :].

22. My illness has taught me: That I can choose how I define my own world.

23. Want to know a secret? One thing people say that gets under my skin is: “Oh, it’s ‘just’ asthma.” Yes, because BREATHING is not important AT ALL. “It’s all in your head.” Actually, it’s not–and I’ve got a copy of my methacholine challenge that proves that.

24. But I love it when people: Are aware of the realities of living with asthma, the variations of what “asthma” can mean and make an effort to be conscious of people with this disease.  Or… if they’re interested in discovering the above!

25. My favorite motto, scripture, quote that gets me through tough times is: I think there are a lot of them, but mostly they come in song form.

Watch the Sky – Something Corporate (“and i’ve been up for days / I finally lost my mind and then I lost my way / I’m blistered but I’m better–and I’m home. // i will crawl–there’s things that aren’t worth giving up, I know. / but i won’t let this get me / i will fight–you live the life you’re given with the storms outside / some days all i do is watch the sky // […] i think i could use a little break [but today was a good day]“), has been a big one through long nights of asthma and ER visits for the anemia. From my ER visits this year, the picks were

Caves – Jack’s Mannequin (“no peace / just clicking machines / […] / i lay still, still i’m ready to fight […] / the walls are caving in / as far as i can see […] there’s no one here but me / beat my body like a rag doll […] windows leading to the past / think it’s time i broke some glass–get this history off my mind / […] everything’s a piece of everyone.“),

Diane the Skyscraper – Jack’s Mannequin (“but I don’t have the energy / so she plugs my machines back in […] / i’d be lying if i said this was my plan / but we are all in this together / see i’m trying but i just don’t understand / why i can’t predict the weather past the storm.”) and

I Swear This Place is Haunted – A Skylit Drive (“Is there something beyond science going on here? / in the dead of fear, fear / […] this is the last winter–part of a change for better / I’m moving forward now–turn all of this white, the creature at night / you said it would never find out where I rest my head at night.”.)

26. When someone is diagnosed I’d like to tell them: Do what you have to do, stay–or become–active, make good choices, ask a billion questions, and own this thing.

27. Something that has surprised me about living with an illness is: How much my perspective on just about everything has changed. For the better.

28. The nicest thing someone did for me when I wasn’t feeling well was: Hands down, Medicine-X last year was full of these things. People there, my fellow ePatients, understood my prednisone induced crazy. They asked the right questions and made me feel like I was supported and cared about. My friend Steve checked in a few times a day to make sure I was okay and kept offering to drive down the couple hours to Palo Alto if I needed anything. It was overwhelming, and I felt like shit, and I really could not have gotten sick in a better place as unfortunate as the situation was, because people there got it. People at home have a harder time comprehending it.

29. I’m involved with Invisible Illness Week because: Just because you can’t see it–doesn’t mean it’s not there. I usually look–or can look–totally healthy, even if I’m not.

30. The fact that you read this list makes me feel: Thankful. That one person at a time, you and I can change our own perspectives . . . to change somebody else’s.